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My first marathon was an impulsive decision I made in my 20’s before my frontal lobe was fully developed. Since that first marathon, I have run a total of 5 marathons and was celebrating a conscious uncoupling from marathons for the past 10 years.

The first time I ran a marathon

iPhones did not exist

Texting was fancy

I listened to music on an MP3 (because the iPod was a passing fad)

I had 2 weeks to train.

I was a young mom with three babies, 4-years old and under. I had survived three high-risk pregnancies with three healthy girls and was a trainer in a gym. I was living the miracle and felt a little invincible.

I had two weeks to train. I had no idea I was even on Heartbreak Hill during the marathon. I decided that when you are not running really fast it does not matter as much. I did not know how many miles was in an actual marathon. There was no “search engine” to fully understand what a marathon entails. My training was a 9 mile run the weekend before and a chat with an experienced runner on the bus ride to Hopkinton. That bus ride probably saved me a trip to the hospital that day. Who knew those water stations were important?

Currently, at 44 my life and legs have changed. My girls are calling me excited about their college classes. My father is not available to get nervous about my crazy life choices. And, my life has helped prepare me for this marathon. I made the decision to run this time for, Cal, my running motivation.

The training was going great until July. I had to take a month off because of weakness in my left leg and the summer heat. Today I finally felt strong enough to run a solid distance. It takes a lot of planning for me to run that distance, now. I don’t understand how my body works but with a fully developed frontal lobe, I am very careful.

I decided to add caffeine to my life again and only drink one cup of tea before my run. I am still intermittent fasting which means it has to be timed perfectly in the day. I am trying to add more yoga to my schedule. Today I crushed my 10 miles in under 90 minutes and was able to work a full day, walk the dogs, bathe the dogs, fold laundry and clean my house(“clean” might be a generous description of my house..cleaner is more appropriate).

I am thrilled that I hit my goal this morning and I am ready for next week. My goal is 11 miles.

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I am not a doctor and have no background in science. I am unwilling to study the why of my life. I don’t understand how my body works or why it won’t work. It has been almost four years of this TMI life, and yet because I don’t wear a neon sign stating the obvious, smart and kind people dismiss my journey.

Second opinions were not enough for my diagnosis. I have met with 4 Neurologists (two of whom were MS specialists ) and 8 Rheumatologists over my lifetime. I won’t include the countless PCP’s, OB/GYN’s, and all the extra doctors in the room during my appointments.

A conservative estimate of twelve specialists at the best hospitals in Boston questioned the diagnosis and have come to the same conclusion. Please don’t see me for a few minutes and make a diagnosis from your kitchen counter.

Chronic illness can be invisible. Please keep that in mind when you hear about a friend with a diagnosis.

I stopped trying to categorize my symptoms and I don’t dwell on the hiccups of my life. I am, however, tempted to get a neon t-shirt that says, “It takes a lot of work to look this good”.

I am not usually vocal about my illness unless I am sitting on a paper roll, but 93% of communication is nonverbal. I was monitored for three high risk pregnancies and spent two months in the NICU with my premature baby. I listened to my doctor when she told me that my body was too weak to carry any more children. After 26 years, my husband can read my pain with spidey sense. My cleaning lady knows when my sheets are drenched from night sweats. A keen eye can recognize my awkward gait after a long car ride. But, when people question my diagnosis it is painful and dismissive.

Last month, I had my annual MRI and my neurologist was impressed with everything. I improved with every test except one. I struggle to walk across a room with one foot in front of the other. I promised that I would practice and next time I would dominate. He laughed with my intense focus. I have learned that great warriors are neither perfect nor lucky, they just know how to handle adversity and know when to surrender. I am a warrior, constantly adjusting,

I run everyday and at the beginning it feels like I am Kaiser Soze from The Usual Suspects. My gait is awkward and I can’t feel my feet. It usually takes me about 2 miles to feel my body but I still run.

My initial walk/run is awkward and slow but I can finish like Tom Cruise in a Mission Impossible trailer. I like to focus on the Tom Cruise image but that is not who I am.

Three years ago when I dropped my daughter at college, I was struggling with daily fatigue and weakness. During orientation weekend I made a quiet arrangement with my legs. I would respect my body and walk up of those grueling Ithaca, NY hills, but by the time my girl graduated I would be running the hills, not walking. I am on track to reach my goal from three years ago, but I am not comfortable. I did not walk up any hills this year during my visits to Ithaca but she has not graduated from college.

Visiting my girls at college one week apart. Same legs but the difference between running in Ithaca, NY vs. Philadelphia

Lately, I have experiencing random numbness and weakness on my left side. I was exhausted last month and struggled to get going during the day, but today I feel good. I am not immune to my immune system. My crazy intensity has not cured me of anything but I will move forward and adjust.

I understand that I have some individual successes from the past four years, but I am not satisfied with the results. I will work this year to maintain and get stronger for her graduation and beyond. I will own my weakness and make it my strength. I will practice my walk with my regular insane intensity before my next 6 month neurology appointment. I will run today and finish like Tom Cruise. Eventually I will surrender with the understanding warriors are not born , they are reinvented every day.

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Of course, living with lupus affected me in different ways; joint pain, numb extremities, difficult pregnancies and exhaustion would be the side effects of the disease but it would not define my life. Initially I was terrified, but as I began to navigate around life’s detours the landscape of my life changed. I changed.

When I was diagnosed with MS as a mother of three young girls, I used my life experience with lupus to help propel me forward. I knew nothing about this new autoimmune disease but thanks to the Internet I had an opportunity to be terrified and calm all within one double-click.

Living with two chronic diseases changed me as a parent, partner and friend. I lost patience and gained a new level of empathy. I knew pain and realized that I must respect the boundaries of my life without setting any limits to my potential.

I learned

I must challenge my body every day. I run almost everyday with a phone and a mental note about who I could call if I don’t feel well. I position myself by the door in hot yoga classes, to make a fast exit if something doesn’t feel right. When I see a hill, I sprint to the top and catch my breath before I #HIIT the next hill. Being uncomfortable in this life was the only way to transform my life.

I need to listen to my body. I take a day off from life if my body demands, but I don’t take many sick days. If I have pain I go see a Dr, and make sure my actions will not make me worse. Fear of pain is more debilitating than pain.

I can say no. My time is precious and I have learned to be selfish. Someone once told me that, “You can’t clean someones else’s gutters, if your gutters need to be cleaned.”

I will only surround myself with positive energy and love. I started to “block callers” out my life. Today was a gift that was not going to be wasted on the wrong people.

I do not let obstacles stop me from my goal. Obstacles are just opportunities to learn something new. Failures, repeated failures, are finger posts on the road to achievement. One fails forward toward success. C.S. Lewis

My life was the example of respecting the boundaries of life without accepting any limits. I learned that being in fear of pain and failure was more debilitating than pain and failure. Wasting time obsessing about excuses would just slow me down, and grandiose failures were not as painful as setting limits. My life lessons changed me as a mother/coach.

In high school, when my kids complained about sore muscles, illness, exams, coaches or teachers I listened. My response was consistent and I reminded them words are cheap, just do your job. I never filled their head with false praise. Participation trophies would be tossed in the trash. Life never gave you a trophy for just showing up.

If you want more play time , be better. If you want to do better on a test study smarter(not always more). When they were injured makes sure it was not serious, but don’t waste an opportunity.

There was nothing worse than running with your mom who just had a lumbar puncture and suffering joint pain. Yes, I get it hurts…so what. There is nothing wrong with being average, but I was never going to manipulate the system to get my kid more play time or a better grade. Everyone struggles along the way but it is how we get back up and learn from failure that matter. And, I was a master at failure.

Anyone who watched my girls navigate a jungle gym or tryout for high school sports would be suprised with their future. Both girls were recruited to play Division I sports at universities that exceeded their expectations.

Running along Boathouse Row after a Regatta

At the age of 43, MS has given me some detours, my skin feels like it on fire at times, I have pain in my jaw that will stop me in my tracks, my left side has noticeable weakness and yet last weekend I charted a new path with this disease.Last weekend I went hiking for the first time since I was diagnosed and to celebrate my marriage of 22 years. I was scared because of the weakness on my left side and my recent balance issues.

At the age of 18, I hiked my first mountain with my boyfriend, at the time. When I told him that I needed a gallon of water at the summit, he carried my water in his pack. I was young and fit and struggled to climb to the summit. Half way up, I remember asking him if we could just turn around at the first nice view. I was young and in shape and struggled with no pack up that first mountain. I finished that hike with his support and that gallon of water at the summit.

Of course, I was engaged immediately after that hike. After being married for 22 years it was a good test of any relationship and it was why it only took us two weeks to know we ready to get married. For the past 22 years we have both carried that back pack. I carried his baggage as much as he has carried mine.

On our hike to celebrate 22 years married and 25 years together, I wanted to carry the pack with not just my water but all the supplies. I flew up the mountain and ran with that full pack. I have improved with age, experience and my family and friends.

My husband did take the pack as soon as we hit this sign.

It was a good call because the pack was so heavy that I almost fell back a couple of times. So, although I feel like I have #nolimits… I am #nofool. I am conservative risk taker.

At 43, I am still married to the boy who carried my pack. I have learned the difference between respecting life’s boundaries and working through the pain. I believe that pain is weakness leaving the body only if you your respect your body.

I have been warned to not run, be careful with the heat and don’t get too tired. I take naps but they are short. I run on hot days and love my hot yoga classes. MS is a mystery to me and I continue to learn more and more about this white matter disease everyday. My journey is unique but my lesson is universal.

#fuwhitematterdiseases

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As a mom of a 16, 18 and 20 year old, I encourage my girls to go unfiltered. It is hard to look at yourself and yet it is easy to look at others and form opinions…maybe even pass some judgement. I have been thinking about social media and the world we create through a perfectly positioned camera lens. We change filters and alter images to create the best image.

When did miniature golf become an opportunity to do you hair and wear your best summer outfits? I am fascinated by the mini golfers who hold up the line trying to get the best photo doing the most boring activity in this world.

I recently sat with a friend as we discussed how online dating and social media has transformed our relationships and interactions. I encourage you to take a peek at Tinder, OKCupid, Facebook and even look at Snapchat, Instagram, Linkedin and the multiple other social media platforms. The world has changed since *69 was a big deal. I am not dismissing the importance of *69 because it was a BIG deal. I could no longer call the boys I like and hang up… it was an upsetting invention for an awkward teenager.

We are always changing because of this fast paced new world. We are judged so quickly and yet we are more than our best selfie or profile picture. It is impossible to hide or be anonymous in this new world.

I am sharing my unfiltered selfies. This past year, I had the pleasure of visiting my second daughter in Philadelphia and felt the blessings of this life. I ran along the route that I watched in the Rocky movies years ago. I ran along boathouse row and up the museum steps past the Rocky statue and, after I made it back to the hotel, I took my own selfies.

I encourage you to judge every detail of my photo. I want you to judge my before selfie that I took in October of 2014, May 2013 and my new ones from this year. While you judge my hat or my bad hair, I want you to keep in mind there is more to me than these photos.

I am in my 40’s. Nothing has been easy. My body has been both a gift and curse. I have heard from people that I am “just big boned”, “small boned”, too skinny, too fat, weak, strong, sick, healthy, fast and slow. You name it and I have heard it. I am a woman with 40+ years of experience and have heard many opinions of what “beautiful” is. Sometimes I can fit that mold, and other times I miss the target.

The good news is that, I am in my 40’s and I have my own opinion. I am passing judgement on my own selfies.

I will be celebrating my 21st anniversary of motherhood this year. My body survived 3 high risk pregnancies. My body carried me to the NICU at Children’s Hospital in Boston every day for 2 months. And my body gave me the three most precious gifts in this world.

My body has also betrayed me multiple times, but somehow we have finally established an amicable working relationship. I am sure I will be betrayed in the future and we will have to establish new rules.

Today was a gift that I will never get back, and I am thrilled that I took advantage of it.

I get to pass judgment because I know my journey was not easy. There was a time that I was so busy getting the wind knocked out of me that getting back up was reflex and not a choice. So today, I will celebrate my choice to find my best self. Today, I will thank the road that brought me to those legs, abs, and arms. I am strong because of hard work. And today I will take this body and run with it-so please, pass judgment!

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On Monday I celebrated my 20th anniversary of motherhood. I spent the day visiting my daughter who is a college Sophomore in Ithaca, NY. On the morning of her birthday I ran her college campus multiple times even though it was in the single digits and my phone would freeze unless it was flush against my skin to stay warm. The run was painful but I felt amazing. During the college search process I promised myself that I wouldn’t support a college choice unless I could run during my visits. I set a goal to sprint up every hill in Ithaca by the time she graduates.

During this difficult run I was reminded of a question posed by my middle daughter almost 15 years ago. I can still remember her practicing her letters on our kitchen table. She never lifted her head from the table during our entire conversation. “Mom I know I got my math skills from my Auntie who is brilliant mathematician and I know I got my writing skills from my other Auntie who is a talented writer, but what did I get from you?” After running through a long list of possibilities, sense of humor and good looks were on the top of my list, she rejected every idea and finally said, “Don’t worry about it because you gave me the gift of life and that was enough”.

I love my girls and desperately want credit for everything. I know we are so different, however I like to think that in addition to the gift of life I gave my girls the gift of resilience. They are masters of handling stress and moving forward. It is trait they all share and it is the backbone to their success. I’ve always viewed my life as teaching moment.

For years, I used my relationship with swimming as a guide to handle stress. As a child swimming was not just my weakness, it was my greatest fear. I was so bad that I remember one frustrated instructor endorsed the dog paddle as a reasonable path for some kids. During swim lessons I was satisfied to stand on the swim deck and watch my weak minded peers blindly follow the instructor. I was never embarrassed about being difficult.

My islander parents would not accept my adversarial relationship with water as an excuse to not learn basic survival swimming. They worked for hours to help ease my worries and sent me to the best instructors in the area but nothing worked until I had one lesson with my dad.

My dad had a gift for patience and storytelling. It was a unique combination that made him my first defense to any stressful situation. A conversation with my Dad could only be compared to taking a combination of the best anti depressant and anti anxiety pill with one side effect. At the end of of every conversation I usually had a supreme inflated ego. My dad was so masterful in this role that during my most awkward years he convinced me that I was a brilliant academic who had a future as a Seventeen magazine cover model when I was actually an uninspired student who looked like an overweight man-child (that’s the exact description my daughter bestowed on my middle school photo).

On one magical night he sat next to me in our backyard pool. He asked if I knew the secret to swimming, which of course I did not know and did not want to know. He said that I only needed to master one skill to be a great swimmer and then I was hooked on his lesson plan. I could conquer my greatest fear by focusing on one thing. Ok, sign me up!

He told me that he was one of the best swimmers on his island because he was an expert in floating. Floating was his key to success because if he got tired he turned over on his back until he caught his breath. If the water got rough or his boat capsized he never fought the current instead he would float until he was strong enough to swim. If you ever saw my dad in the water that man could float for days. That night I mastered floating and conquered my fear. I was also the oldest child to graduate into the advanced beginners swim session under the watchful eye of the famous Mrs Millican.

Floating was not only my trick to master swimming as a child, it became my strategy for handling stress. Getting bad news in my life was like getting hit by a storm in water. Some storms were more powerful but I could just float until I had the strength to swim. My dad was in the water with me for most of the big storms. He was the great protector who would take the big blows and make sure I just felt the current that was left in the wake of the vicious waves. I floated for years with his help and became a proficient swimmer.

My protector

The pain of losing my dad hit me like a tsunami in unprotected waters. I realized that not only was he protecting me from many of the big storms, he also had his hand under my back the entire time. I was tricked into believing I was a gifted floater and masterful swimmer.

I lost my dad in December of 2013 and I was constantly gasping for breath and barely staying afloat in these new unchartered waters. My daughters rallied around me like a coat of arms and propelled me forward. During my darkest days I had two girls getting ready for college. The college process was already a unique time but this added an a new level of complexity.

I remember hearing about a relevant Slate article from one of the greats of our time, Rob Lowe, regarding sending his first child to college. I always felt a strong connection with Rob since he spent so many years saying good night to me when he was a member of the Brat Pack. His Teen Beat picture had a prominent place on my wall. Other than that one awkward sex scandal, we were kindred spirits. I was excited to connect again. I googled the article and it already looked promising with his beautifully chiseled face front and center. By the second paragraph when he compared his son going off to college to the death of a parent I was out! I felt betrayed by Rob. I thought we had so much in common but I was going through the loss of a parent and sending a child to college at the same time and there was nothing similar.

While I was consumed with the grief of losing my dad, I was sandwiched between one freshman daughter in college and senior in high school. I traveled to watch my Freshman play her first scrimmage in her first softball game as a collegiate pitcher. She was living her dream and I had a front seat in her life. Her path to this field was a Greek tragedy with a shockingly happy ending. I thought of my dad because he never loved the game but he loved his grandchildren and jumped at the opportunity to watch her play. He used to make the sign of the cross every time she struck someone out and once showed up during a practice to stare down a bad coach. My dad could not resist swimming in her ocean. I was thrilled to be there for her first scrimmage, but heartbroken I couldn’t call my dad.

I grabbed my winter jacket from the car to walk the fields of Ithaca because I wanted to hide my tears. I had not used the jacket for months and though it was not cold I felt compelled to be a little extra warm. I was holding my husband and sobbing thinking of the past year. I placed my hands in my jacket pocket and found my dad’s gloves. Here were his big grey fleece gloves in my hands and I felt him next to me. Instantly, I went from barely staying afloat to this desire to swim, for the first time.

I went home from that trip and I was excited to look at colleges with my Senior in high school. As I drove to multiple colleges I had an opportunity to connect with my girls and it became clear that Rob Lowe was wrong about everything. Watching my girls enter the next stage of their lives was the best gift in the world and it was the opposite of sad. I cherished every second of motherhood even when I was in pain.

On my 20th anniversary of motherhood I was emotional thinking about how far we had come. I realized that I am not a naturally resilient person nor am I the best mother. In reality, I am just smart enough to surround myself with remarkable people. My ocean has transformed because of the violent storms and I have weathered. Those storms and the people in my life changed the landscape of my life in an extraordinary way. Not only are my girls swimming next to me the entire time, they’ve inherited their masterful swimming skills from their grandfather. As I sprinted up the hills of Ithaca, fighting against the wind, I felt blessed.